Mary Caruso » understanding

The decision to step up to the plate

Mary — Tue, 23 Jun 2009 19:35:13 +0000

the start of our journey

a few of the members along with co-founders Ron & Raychel

It is not necessarily the easiest thing to do. Deciding to take part in a drug- trial is serious business. It is exciting because when Sam was diagnosed there really was nothing going on. AND I mean NOTHING. Yes there were a few people working on cloning the gene. That means that they didnt’ even have a way to confirm a diagnosis through blood work. Sam had to go through some pretty painful testing to have a diagnosis that was given based on clinical measurements. A year later the gene was cloned and that was a big step for many reasons. It meant that people could forgo the painful testing and the research could just go on in a more precise manner, and that is exactly what it has done.

With the help of a wonderful group-FARA- research has just taken off. What is equally as important is that fundraising and awareness have also taken off. It seems like in the last ten years things just keep moving along in a positive way.

Paul brings such expertise along with incredible passion to the board.

Tom & Jen hard at work

So this brings us to our journey this week. Sam has been brave enough to sign up on the FARA patient registry site and has also been lucky enough to have been called upon to take part in a clinical study for a drug. Since I am really worried about the sensitivity of the whole thing I don’t want to say anymore. But as in everything else in our journey together this has been a wonderful trip!

We have been able to take time to talk and laugh and meet all kinds of great people. The worst part-leaving Alex.

my other hero

We are so used to being the three musketeers it seems so unnatural to split up. But it would have meant finding one more person to come along and we just didn’t have a lot of time to pull it all together. So she will enjoy some relaxing time away from us.

ok so I did most of the talking

We took the train so we didn’t have to worry about driving. We enjoy taking the train as it gives us time to slow down and meet people. We met this great young man who was getting deployed to Korea, he is with the Army and he was really sweet. What was so very moving was that people would just walk up to him, shake his hand and say “Thank you”. I am embarrassed to say I never do that, but that I will do it now. What a wonderful way to show respect and gratitude to these brave men and women who serve our country! I cried and Sam was embarrassed. But he was a dedicated and kind man we really enjoyed our time with him.

We got to Philadelphia and had a great walk up to our hotel. We stay at the same hotel when we come so by now everyone knows us and it is a very friendly encounter. We window shopped and talked and interacted with people on the way. We had this GREAT dinner together at a Mexican Restaurant. We started first for another Mexican restaurant that was recommended but after the long walk we found that it was not wheelchair accessible, but worse was that when I went in to try to cheerfully request help getting Sam up the stairs I was met with blank stares and a flat “no”. Oh well their loss because it came to me than that there was this other Mexican Restaurant closer to the hotel. We found our way over and got to sit outside, it was beautiful weather in Philadelphia and the food was great!

Sam and our waiter Brian

We had a charming and funny waiter, Brian. He and Sam had a great time bantering back and forth. We had a wonderful meal and walked around the city some more before we crashed back in our room for the night.

The next morning we got up early and eagerly made our way to the hospital. It really is odd to say but we love coming to CHOP. The team “our team” is made up of the most amazing and well qualified people …ok I am going to say it …..IN THE WORLD!

The BEST neurologist in the world!

Dave, Erin, Lisa and now Baali…………. are just AMAZING. They are the best of the best and then they treat you like a human being on top of it! Something just doesn’t seem right about that! Just kidding! We love to go because we know we are getting the best care around, we truly enjoy their company and we feel like we are on the right track! So we got there and saw our “team” and the table turned for Sam for the trial. Without saying too much half way through the morning it became apparent that this was not the drug trial for Sam. My heart broke for her only because her concern was she was letting “the team” down. But what she doesn’t know is that she is still our hero! What is important is that she stepped up to the plate. The fact that so many of our kids and patient population step up to volunteer is what matters. The rest is up to the investigators, criteria and yes maybe even a little ……..fate! So our journey took us to an early trip back home but not to the end of the journey. Because as we all know the journey continues……………….and through it all Sam remains my hero

So if you are willing and able give her a little “shout out”! She deserves the acknowledgment!

With love and dedication to my girls and all those who volunteer their time for these trials.

Always

Mary

Slow and Steady wins the race!

Mary — Wed, 11 Feb 2009 13:03:10 +0000

“Life is not what society trains us to think it is. It is so much more. The diagnosis of our children with FA is not something we want, but something that steers us into the direction of finding in life what others may never understand. “

As quoted by my Connecticut friends- Tom & Caroline Hopkins – parents of a young daughter with Friedreich’s

So many people will never understand the true meaning of these words. You don’t necessarily have to have your life challenged to know what the words mean. There are some who naturally get the “true meaning of life” but there are others who will never get it. I try to use this example when I push the girls to enjoy life and be grateful for what we do have. Because of this understanding we live with extreme compassion (sometimes way too much for those around us) and with that compassion comes the will to fight, to survive; if you will.

I had the pleasure of working in the FARA office last week with Jen and Felicia and the great new person, Lynn! It was encouraging to see how big FARA really has grown while still keeping the big heart that we have always given it. I feel that this is the one thing that has kept us above the rest! This is a group of people with diverse backgrounds (heavy hitters as they say) but who are all extremely kind, compassionate, accepting and with an undying desire to work with everyone! How proud I am to be part of this incredible group of people! I’m actually not sure how I really got here!

Boy! Those girls can pile on the work!

jen-always busy working for that cure!

The important part of the growth besides the obvious push for a treatment is the awareness that has been brought about. I can not tell you how lonely it was in 1995 when there was nothing……the isolation was almost unbearable, the unknown scary. We are not quite where we should be as a society. But with our open hearts I am optimistic that one day we will as a society treat all people with dignity and respect. How easy it is to judge someone on their looks rather than take the time to listen, be patient and really see what is inside someone to see their true beauty! AND… the more we try to overcome the prejudice the better we become as people.

: felica and lynn hard at work!

Besides working in the office I spent some great down time with both Felicia and with Jen and Alan and their beautiful sons, Garrett and Luke. It was such a pleasure to be part of these kind and loving families. It gives me such insight as to why the mechanics of FARA work so well. Obviously people who are so content and happy on the inside just can’t help but bring that joy outward. Their homes are true testament to the generosity they exude. I was made to feel comfortable and felt so much at home with both families. I was even able to feel comfortable as I joked with Alan and his obvious compulsive behavior with frosting on a toaster strudel.

Who does this? only Alan!

But really, a wonderful experience and I feel like I did something worthwhile with my time by helping out with the clerical stuff. I am also proud to know that these people have touched our lives and continue to do so everyday.

famiy roots begin when two people fall in love.

to be this happy in the morning says something

I also had the exciting adventure of a life time as Felicia scouted out the bike shop that Holly had set up in advance to help with the purchase of “THE BIKE”! It is presently locked to my ankle-a little hard to get around the house like this but I will get used to it-! We got lost at every turn, backed into busy streets and laughed so hard we cried. We got to the bike shop with two minutes to spear- but low and behold! We got the bike! It sat at Jens for the week and then once again my dear friend Felicia delivered it to me in Connecticut. Now I just wish she could also ride it from Portland to Seattle in March. hmmmmm i wonder if I could somehow arrange that?

Be sure to take the time to get to know your friends a little better today. You will be the better person for it!

And maybe develop a bit more passion for life by stepping into someone else’s shoes………

A big day and a fun adventure !

In Love and Peace

Mary